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Saturday, December 28, 2013

Autisticook is a 37 year old woman from the Netherlands who works in IT. In her spare time, she loves reading, doing renovations on her home, and playing with her cat. She objects to being called crazy cat lady but doesn't mind being called a nerd.

It was just after the first exercise in the mindfulness for autistic adults group. One of the women in the group was sitting with her head down and if you looked closely, you could see that she was crying. When the therapist asked her a question about how she’d experienced the exercise, she didn’t respond at all. It was like she wasn’t listening, wasn’t even there. She just kept rocking back and forth with tears running down her cheeks.

The therapist asked if she wanted to be left alone and that, after a slight delay, actually got a response: some vigorous nodding that seemed like an extension of the rocking, but was probably meant as a yes. The rest of the group then continued with talking about the exercise we’d just done.

When everyone else had had their say, the therapist addressed the unresponsive woman. This time she lifted her head, but she didn’t make eye contact with anyone. The therapist asked her what was the matter, and the woman started flapping her hand near her ear, looking very angry. Then she blurted out: “Words!” There was a bit of confusion at that, but the therapist asked if she was having trouble finding the right words, which made sense. The woman replied with an emphatic “Yes!”

In bits and pieces, the story came out: something about the exercise leaving her far too open to all the noises in the room, in the building, and on the street outside, not being able to self-regulate anymore, and melting down. It was obvious she was very distressed, she even used the words “so painful” to describe the sounds. At that, some of the others in the group nodded. They knew what she meant. The therapist asked if the woman wanted to leave, but she said: “Want to try”. So the therapist said we could all take a short break and that the woman could rejoin the group when she felt ready. She said she was going to go outside, and put on her coat. Someone helped her pour a cup of tea to take with her.

Only I noticed the multitude of angry red welts from where she’d been digging her nails into the back of her hand.

Dealing with a public meltdown. Dealing with the pain of sensory overload. Dealing with the stress of having other people, strangers, see you in your most vulnerable moment. Dealing with suddenly not passing anymore, and wanting to hide. Dealing, coping in the only way that’s still open to you: trying to block the pain by inflicting a different kind of pain on yourself.

Monday, December 23, 2013

There is a subfield in educational psychology called risk
and resiliency studies, and it is pretty interesting. It is not my field but I
keep track of it because the findings of my colleagues here have bearing on the
things I do in my work. One of the first things I heard from them which stuck
with me is that a major resiliency factor, or something that can what they call
‘inoculate’ you against whatever may happen in life so you bounce back maybe
better than you might have done otherwise, is a sense of humor.

For me, I think this might be true. I am a generally joyous
person and the fact that things which happen to me in life can crack me up even
if they are mostly on the heinous side probably is what keeps me like that.

But this blog, We Are Like Your Child, was created because
so many of us who are resilient because of this and similar reasons may seem to
people who are not-us as if we are performing “Dancing Through Life” in the
musical Wicked. This does not help
others relate much in the practical realm, because it is not, strictly speaking, what they
call Keeping It Real. (But I still recommend keeping it funny and musical when
you are able, because it does help me and my friends bounce back, and also
Studies Have Shown.)

Recently I have been having a very hard time with time
management, conflicting and equally unhelpful notions of fast and slow that
people might get about me as a result of my time agnosia coupled with lateral
thinking and divergent communication style, and the catastrophic results of
rushing. The hard time I have with these interactions sometimes is probably
accurately described as ‘crushing’ or ‘devastating’ even though it is difficult
for me to type such emotionally fraught words, just to let you know, because of
my natural desire to keep it light… I should just now also report the discovery
that when not keeping it light, more pain is experienced. OK: on with it.

In my blog I talk about time agnosia in my ordinary manner.
Here are some links. A silly one HERE and this one HERE which is more useful but still light in tone. But if you think about what it really means, you will also
find that it is often quite the inconvenient impairment and can create threats
to such important things as my job security and my ability to let people know
the true extent to which I care about them. In the culture in which I live in
the northern part of the US, predominantly organized by “white” heteronormative
values, middle class, academic, etc., “being on time” is meant to communicate
respect, caring, and a host of other things. Whole virtues such as ‘promptness’
and ‘punctuality’ are built around this concept. It is even part of our construct of
‘reliability.’ This means for me that in the baseline of my normal daily life,
there is always thrumming throughout the fabric of everything social a high-anxiety expectation and probability of failure, shame, miscommunication,
etc., even though I have a remarkable system of electronic and social
scaffolding in place to ward off actual disaster...

Notions of “fast” and “slow” are related to this, for me, and equally permeate my life in hurtful ways. I
believe these have to do with time-to-respond, which is not something I am
easily able to gauge in myself, but I have seen in interactions among others and also in the way people react to me.
Apparently “fast” (or “intelligent”) people respond rapidly and “slow” people (who might
be called insulting words and condescended to) take a while. I am both of these alleged kinds of people at different times and in different contexts or activities.

I think that sometimes people expect me to be “fast” all the
time because I can be “fast” sometimes and that is what they consider valuable
in other people. But it is not possible for me to do this, usually because some of the
things expected are areas of non-forte, but sometimes because other circumstances such as migraine or sensory overstimulation are throwing a spanner in my works. In these eventualities, I have
experienced people getting angry as if I am doing something wrong towards them
and/or doing it on purpose. I do not think this is logical, because why would I
do that? But it is what happens sometimes. They might then proceed to try to
rush me more. This rushing thing is understandable in a way because the people
might believe that rushing someone will make the person speed up. But it is
likely to have the reverse effect. More than likely: probable. Rushing is very
stressful and actually causes me to be less excellent at thinking, speaking,
writing, etc. Or really anything, because I am so busy trying not to melt down
about the stress of being rushed that no resources are left open to try to do the thing the rushing person wants me to do more rapidly.

This is what actually prompted this column. If someone you
know to be sometimes “fast” is being “slow” or something, especially if they
are not the kind of person who does well with time management (so they might be time
agnostic like me or anyway to some degree have issues with that) or maybe even
if they are any kind of person at all, please try not to rush the person. Being
“fast” or “slow” is not controllable at will and being rushed is stressful and
counterproductive causing great anxiety and loss of dignity if the person
contemplates and notices that you are saying how “slow” they are or such, which many of us are aware is code for 'less valuable as a person' even if it is not consciously meant that way in the moment. If you are rushing someone who is "slow" most of the time and does not usually or ever present as "fast," please do not do that either, because the least harmful assumption is that their experiences of rushing would be similar to mine. Value is not velocity, even though I can see why it would seem like that given our cultural ideas of reliability, "time is money," etc.

It is very helpful to know the person and what kinds of
things cause the particular person to have glitches and anxiety or difficulty
doing the things they are trying to do, if you get a chance and want to be
useful in the situation and really need results. Then, do what you can to
minimize the distractions or items causing pain, distress, and/or confusion and
the like. This is likely to be in practice that you are basically doing the
polar opposite of rushing the person or telling them to hurry up or telling
them that you need it right now when in reality there is more leeway. Also if you are good with time you can create a situation where things are not last minute and in need of rushing because you have used your ability to plan ahead better to the benefit of both of you by creating a bigger span in order to do whatever it is at a more relaxed pace. People in my life who do this last thing have probably increased my lifespan. I am not exaggerating. It makes everything worlds more doable and I feel it as love. Reduction
of anxiety is golden.

Thank you very much for listening to that. Also this: our
humor and resilience keep us going. Please do understand that many of us don’t
go around thinking and talking about how difficult things are all the time because then our
lives would be focused in a direction of gacksville. Your child might be like
us in this, and if so, it's a good sign for resiliency and bouncing back in the world! We are like your child.

Thursday, December 19, 2013

When I was a toddler, I wasn’t supposed to be autistic. And
so a speech-language pathologist told my parents that if they simply stopped
responding to my made-up gesture language, I would start talking.

What followed was many years of me getting berated for being
too shy, of everyone assuming I was just afraid to speak, and not that it was
actually too hard.

(Before very long, I was
afraid to speak, though, because I was persistently misunderstood when I did.)

For a very long time, I could not reliably use spoken
language to make myself understood or get my needs met.Either because—though I could
technically speak, with difficulty—I couldn’t say what I needed to, or I
couldn’t get anyone to believe me when I could.

To make a long story short, I eventually found theater, and
there learned the practicality of scripting—and in debate, the knack of saying
things like you just expect people to believe them—and talking got a lot
easier.But never truly easy.

Communicating in spoken language always feels like playing
with fire.I wrote once in a
journal that it felt like I was always speaking English as a second language,
except that I didn’t really have a native language.

Talking is almost always an unnatural way to communicate for
me.It doesn’t seem to be a
strictly physical issue, like oral motor apraxia, for the most part, but feels
like it has more to do with difficulty in starting and stopping, and something
about my sense of timing and rhythm, of momentum and inertia.The strain of doing it too much feels
very similar to that of having to multitask too much for too long.

Speaking and conversation involves some of the most complex
mental gymnastics I do on a daily basis.I’m relatively good at it because I’ve forced myself into a lot of
practice under difficult circumstances over the years, not because it’s natural
or easy.It isn’t.

It’s been especially hard the past couple of weeks.I was working on a project during which
my communication abilities got pushed to their outer limits, in multiple ways,
for an extended period of time.The
energy drain has taken a huge hit on my speech abilities.

It might have been a short dip—if the stress is relatively
short-term and not persistent, I can recover with a single decent night’s
sleep—but I just kept getting badly stressed without a chance to recover over
the course of several weeks…so it’s going to be a longer dip.It’s been a couple of weeks now, and
just starting to really feel better.

I can only get away with talking as much as I do because
most of the speech I have to use in the course of a typical work day is at
least partially scripted, which alleviates some of the stress of real-time
translation involved in using spontaneous speech.

It helps to rest it and take long breaks whenever I
can.I come home from work and
don’t talk if I can help it.I
take non-speaking days to give myself a break.On my days off, I go somewhere to read, where I won’t have
to talk to anyone beyond ordering coffee.I listen to as little human speech as possible—sometimes I don’t even
turn on the radio in the morning like usual. I put off phone calls.If I watch TV, I use the closed captions so I can watch more than
listen.Letting myself think in
pictures, patterns, and loops.Leisurely
pleasure reading.Doing something
with my hands that requires very little verbal thought.Getting as much sleep and downtime as
possible.Staying away from
multi-tasking, doing one thing at a time and letting myself sink deeply into
that task…not switching back and forth between tabs in my mental browser
window, so to speak.

There are times when intense practice can help to strengthen
and reinforce speech abilities, but there are also times when backing off and
resting is necessary to preserve those abilities.Like any other physical or intellectual exercise, it can get
easier as it becomes habitual, but it can also be pushed beyond a reasonable
limit.

It isn’t distressing or uncomfortable, in and of itself, to
not be able to talk.Unless
someone’s pressuring or forcing me, refusing or unable to understand my best
efforts, or I’m in a situation where I don’t have any choice but to push
through that boundary and keep doing it even though I know I’ve hit my
limit.

That hurts…literally hurts.I get home sore all over, with and my ears ringing and a
piercing tension headache.I’m
sick and exhausted for days afterward.

But just to be able to not speak—It’s
restful.It’s comfortable.It’s a relief.It’s something I need, and there’s
nothing wrong with that.